Try

My boy was diagnosed a couple of days before his 13th birthday and he turned 18 at the end of last year. He’s turned from a child into a young man during these five years and had Type 1 diabetes with him all the way.

I’ve been thinking back over the ups and downs of the last five years and wanted to write down some things I wish I’d known:

  • Numbers do not define your child or you. Your child is not a number and the numbers that come along with diabetes do not make you a good or bad parent. They are numbers, your child is not a number and you are as a parent should not be defined or define yourself based on these numbers.
  • Blame, jeez, I hate this word. There should be no blame. Not for less than perfect blood glucose levels or HbA1c, not for your faulty gene pool, not for anything around the management of diabetes and especially around the numbers which dominate so much of your role as a support person. Watch the language you use around your child in relation to diabetes, as some of the traditional language used around diabetes contains implicit judgement. I was so lucky that the #LanguageMatters movement came about not long after my son was diagnosed and it helped me hugely to talk in a way that did not judge my son. “Testing” soon became “checking” and I eliminated words like “control” from our vocabulary. More than this though, I understood it was a mindset and continue to be careful in the language I use around my son.
  • Perfection is not a goal and if it were, it would be a big dud of an own goal! It’s more than likely that despite your child’s and your every effort you will not hit targets set. That’s the gig and accepting this sooner rather than later will make life easier.
  • Love. Love your child and yourself and all your imperfections. All the crud that goes around diabetes will swirl around you in an ever changing maelstrom but at the centre of that, hold your child close to your heart.
  • Question authority if you need to. We found ourselves in situations where we lost trust and felt badly treated. It is alright to walk away from a situation where you feel your child is not being cared for in a way that you feel is appropriate. You are not powerless even when it may feel like you are. I wish we had made changes much sooner.
  • Believe in your child. Despite the scary stories and terrible things you hear about diabetes, your child can live a full and happy life. All the hurdles that I imagined in my head, from going on school camps, to working part time and even going out drinking all happened and my boy is still here, sticking his middle finger up at the universe.
  • Sit with the sadness. Your child’s life, despite your and their best efforts, is not quite what you thought it might be. Sometimes I allow myself a sad day where I acknowledge this, and let myself feel the darker side.
  • You are not alone. Find your diabetes tribe: ask for support when you need it and try to be of support when you see similar struggles in others. After one terrifying Google search, I had avoided Social Media when my son was first diagnosed. Some time later, I stumbled upon a couple of blogs, and then started to write my own. Writing, really helped me process how I was feeling as the parent of a child with diabetes and it brought me into contact with other amazing parents and people with diabetes. I was given real practical help when we reached a crisis point and also private emotional support which totally helped me understand what had occurred and allowed me to process it and move on.
  • Think carefully about your online presence, as one day your child may read what you post. I always have this in my head when I write and try to focus on issues from my perspective, as a parent. My online presence is anonymous, other than using my first name on Twitter. I have never written about my son’s HbA1c or posted his blood glucose levels. There are no photos which could identify our family or him. For me this has been important.
  • You are strong. When you have a child with Type 1 diabetes, you learn how strong you can be. You have no choice but to help and look after your child and can survive on minimal sleep, hold down a job, maintain a relationship with your partner and some friends and do all this whilst constantly being aware of everything your child is doing.
  • Your child will be fine. You have spent years waiting for the day they can become independent young adults. You have been a team, working together, learning about how their body responds to so many different variables. They know how to do this and they know that they have you too, whenever they need you.
  • You will be fine. As my son said to me recently, “Chill mum, I’ve got this.” And I took a bit deep breath and said to him,”You know what? I think you do!”.

That’s all we can do, each and every day. We may get it wrong, we may stumble and make mistakes, but we put one front foot in front of the other and try!

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Stepping out of the buffer zone

My son was diagnosed with Type 1 diabetes a few days before he turned 13. He is now well into his eighteenth year. What a huge five years they have been and now seeing him as a young adult, I cannot help but reflect back on those years.

I spent those years in the buffer zone, protecting my child from the world. I was thrown into understanding the complexities of diabetes when my son was diagnosed; learning about carb counting and insulin doses whilst he concentrated on learning how to give himself insulin shots and check his blood glucose levels. This teamwork continued through the first few years with my boy gradually learning more about carb counting and how the various activities he did impacted on his blood glucose levels. This felt like a fair exchange. He was able to go about his life and I was the person who kept in touch with health care providers and school.

Being a teenager meant that the path was sometimes bumpy but we encouraged our boy to live a full life, as we did with our other two boys, in the full knowledge that perfection was not a prerequisite for our full love and support. Sadly, we did not find that all the institutions around us were quite as understanding. There’s something about being a teenager and having a chronic condition. It felt as if my boy had used up all his graces in one fell swoop and was expected to be a model human being in all areas of his life. I struggled with the expectations put upon my child, whilst trying to keep him safe. That’s when the buffer zone was a horrid and lonely place to inhabit.

Zoom forward and now school has finished, a University place awaits him next year and a new health care team is in place. I no longer feel like I need to be a buffer. Harsh judgements are not meeted out and thought is given to the person behind the diagnosis. My son is as safe as he can be.

He is a strong capable young man who can now deal directly with the world. He knows his dad and I are here for him always with open arms and no judgement. He is now an unofficial mentor for a young boy who also has Type 1 diabetes. This young boy comes over once a week and does his homework with my son. The focus is anything but diabetes. Spelling words are practised, times tables worked on and footy discussed but underpinning that, a lovely quiet connection is building which I hope will last for many years.

What do I do now with all my new found time? I am totally relishing it! Baking daily sourdough, cooking my way through the latest Ottolenghi cookbook, getting to hang out with my man, spending time with close friends and occasionally enjoying being alone for the first time in years. Who knew it? I quite like my own company and the silence and peace it can bring.

I haven’t quite figured out what to do with my online identity as ‘mumoftype1’. The diabetes online community has given me so much. When I felt totally lost and isolated, both geographically and emotionally, I found support and learned from people with real lived experience what I needed to know to keep my son safe. I have made friends and slowly got to know more about people than their connection to diabetes.

People come online asking the same questions that I asked a few years ago. It takes me right back to where I was. Did we get everything right in that time? Absolutely not, but we got there! Sometimes I reach out and through this have made some beautiful connections but I don’t have all the answers, and I do not have diabetes. My son’s story is his to tell and my focus when writing has always been about my role as the parent of a young person with Type 1 Diabetes.

I feel so many different emotions as I write this but overall I feel such pride in my boy and in our family. I know the future will unfold with its own challenges but I know we will be fine. For that I am so very very thankful.

No OFF switch but a MUTE button

2019! Yay! It feels like a fresh start after a crazy year. Life is good and life is different!

My eldest two boys have finished high school. The eldest is about to leave for university after a gap year and the second is starting his gap year before heading to uni in a year’s time. Our third boy is in the middle years of his high school education.

Getting two boys through high school was full on and the intensity of the experience was increased as the second boy has type 1 diabetes.

So much is happening in those last couple of years of school. Growing up physically and emotionally, sport, part time work, relationships, social life and just occasionally the odd bit of study. Hard enough on its own but then you add an invisible chronic condition to the mix and we have lift off!

We have weathered a few storms, but found the strength and love to move on. These are not my stories to tell and our relationship is great so for that I am truly thankful.

How has this been possible?

I remember when my son was first diagnosed with type 1 Diabetes, I made the conscious decision to deal with one life event at a time but lurking in the back of my head was a list of things that I wanted my boy to be able to do and he did do them all:

  • Leave the house without me – he did that the day after he came home from the hospital.
  • Go to school (read about that here)
  • Go on our usual off grid camping trips (read about that here)
  • Go on a school excursion
  • Go on a sleepover
  • Go on school camp
  • Learn to be a mean carb counter like his mammy (read about that here)
  • Be able to let his parents have a big night out (that sort of happened here)
  • Play competitive sport away from home without a parent there (read about that here)
  • Get a part time job – very unglamorous jobs in fast food outlets
  • Have a girlfriend ( read about that here )
  • Learn to drive (read about that here)
  • Pass driving test – did this first time! Much aggro in the house as big brother did not!
  • Grow a pair of Diabetes Balls (read about that here)
  • Understand that we have his back no matter what ( read about that here)
  • Grow into a fine young man (read about that here)
  • Go to Schoolies and survive (read about that here and here)
  • Get a place at University- good for him! Despite a shitty Yr 12, he did it!

Wow! What a list! It’s a long time since I’ve read through this blog and I feel so proud of my boy when I look back over the last five years. I often think back to the post I wrote many years ago about The Boy and the Egg. Read about it here. It’s a post which has connected me to people all over the world and for that I am most grateful.

So, what now? Is my job done? I do not have an OFF switch, there is no invisible button that I pass to my son and now let him ‘do diabetes solo’. I am here for the long run.

During this lovely, long, hot Australian summer, there have been some things to learn about navigating the health care system and these are life skills which he will need to know:

  • How to get a Medicare card
  • How to get a low income health care card and the repeated visits needed as more info is gradually required as online forms have not been updated. Still not got this one in our hands yet.
    The patience and resilience not to give up trying to get what your are entitled to despite the overwhelming bureaucracy
    Going to the chemist and putting in a prescription

He has taken all this in his stride and now possesses a wallet full of the various cards (well almost! We are still waiting for the card mentioned above) which will give him access to the people and medication to which he is entitled.

Is my job over? I think not. His dad and I have been by his side in the five years since his diagnosis; sometimes literally, at others, by giving him the confidence and hopefully the resilience to go out into the world. Have we done an amazing job? Absolutely not! We have made mistakes, we have learnt from them, we have made them again and we have moved forward together, albeit with us, as parents, retreating into the background more and more but we are still there.

Changing to a new medical team towards the end of last year has been wonderful. My boy can go to the appointments on his own but we are welcome too, for as long as he want us there. When we go for appointments, it’s lovely to see various combinations of people waiting. Some are on their own, others have family or even friends with them as support. Sometimes these other people go in to the appointments, sometimes they wait outside.

My son recently went to see his Diabetes Educator on his own and it felt right for him to do that. He was happy to go alone and I felt calm about it too. Next time one of us may go with him, if he wants, as his insulin is being adjusted and an extra set of ears really helps when there is so much info to take in.

What is my role in these appointments? I’m a set of ears and have discovered my internal mute button. My role isn’t to talk. Remembering the changes to be made and making notes in my Gen X actual paper notebook is all I need to do. It’s quite liberating!

I’ve discovered that I can use this mute button on other people too. As a parent of a child with a chronic health condition, we lay ourselves and our families bare to those who are charged with helping us. We live in a society where people feel entitled to judge what you do and these judgements can be harsh. I now use that mute button on those who cannot see past the numbers to the person who lies behind them. I use it on people who make stupid, misinformed comments about my boy or how we choose to live our lives. I point an invisible remote control at them and hit mute. They may continue to move their mouths but I hear nothing. It’s great!

Where do I go from here? I feel so positive! I’ve got my tribe! I follow and have sought advice and wise counsel from the elders of the #doc, especially #ozdoc. I have made beautiful friendships online with a few amazing people, including several mums and we message each other, chatting, swapping life stories both funny and sad and giving support where needed. I’ve got a real life flesh and blood d-friend too. Her son has diabetes and more importantly we have a great friendship and so much more in common than a child with diabetes. It does mean though that we trust each other and can talk through situations. How lucky am I?

My boy has the world at his feet, a gap year before him, another year to live at home and learn important life skills with ‘in house’ support to back him up and in a year he may fly the nest. That big event has still not made it onto my mental list!

Freedom! Move over William Wallace!

So here we have it! Schoolies is finally here. For the uninitiated, schoolies is a very Aussie tradition during which school leavers hit party mode hard for a week. Some head to Bali or Fiji, others stay closer to home, opting for places like Byron Bay or the Gold Coast.

My boys think it’s the best thing ever. Living in rural Australia, they have never lived the city life so are happy to stay on these shores. Big brother went last year and survived. This year came the turn of my middle boy who has Type 1 diabetes. Last year I worried about drugs, alcohol, and coward punches.

This year, to my worry list (which I try to contain to a padded cell in my head, visiting only occasionally to indulge in a huge silent scream), I have added 7 nights managing type 1 diabetes alone. Did I even think about stopping my son from going? Not ever, not even for a second.

He has survived 6 years of high school, has submitted hundreds of assessment tasks, sat countless exams and navigated relationships with teachers and peers. For five of those years his constant companion has been Type 1 diabetes. He so deserves to celebrate and the style in which he does that is his choice and is totally funded by him, from the sweat of his brow, after working solidly over the last couple of years in a fast food restaurant.

I read about people living ‘their best life’. It’s a daft expression as, for┬ámost of us, our choices are pretty limited. For my boy, he is totally living the life he wants and that’s what it’s all about.

I dreamt of having children who played musical instruments, were fluent in foreign languages and who loved sitting around watch ABC docos and chatting about the novels they were currently reading. Instead, I wasted thousands of dollars on piano lessons, never got past nursery rhymes in French and Italian, and have boys who do not share my passion for reading. They are however very aware of how lucky we are to live where we do and are grateful to enjoy the freedoms of the society in which we live. They will all be good men. Of this I am sure.

I have gradually realigned my lofty cultural expectations and have grown to accept the weird and wonderful ways of my three boys. The toilet seat at their end of the house is usually up and the first thing I do when unexpected visitors arrive is quickly go and clean it. I know that wrestling me is their version of a hug. I have learnt many life hacks on quick clean ups and coverups!

So here we are now, almost at the end of schoolies. We exchange daily texts, have only spoken once, and Diabetes rarely rates a mention. He is happy and knows what he needs to do. He is wearing a Libre, has his Frio pouches for his insulin and his MedAngel thermometer to make sure it doesn’t get too hot. He has a discreet little running belt under his shirt which keeps Libre reader, his insulin pen, needles and jellybeans just where he needs them. The last five years have lead us to this point. My boy may not be exploring cultural sites of significance in exotic locations and is more likely to be busting out some dance moves in a night club, beer in hand but he is doing exactly what he wants to do, and I could not be more proud.

Meanwhile, back home, I am chilling out! I thought I’d be a wreck this week but I am not. I have slept like a baby, albeit a baby with her iPhone ten centimetres from her head, and I have gone about my day to day life feeling confident in my boy. I have been pottering in the kitchen, working my way through my fave new cookbook Ottolenghi’s Simple, finally looking at what I want to do in my free time. Next week, I’m going to go and sing in a choir. I can’t read music and can just about carry a tune but I love to sing. This choir is only women and they sing 80’s and 90’s music. I am really hoping it’s fun.

The future is here, the moment we have been waiting for. School is finished, a University place has been accepted and deferred and we are embracing our freedom in our own ways. I’m still totally here for my boy and whatever happens, I know Diabetes will throw him many a curved ball, I have his back. This he knows and, comfortable in this knowledge, we can both enjoy our FREEDOM! (Make sure you say that in the same manner as Mel Gibson in the movie Braveheart -go on!)

My Diabetes Family – Growing up with the #doc

My Diabetes Family

I keep seeing this #mydiabetesfamily on Twitter and on other Social Media and it’s got me thinking about who my diabetes family is. Considering that I do not have diabetes, why am I even asking myself?

My middle son has had Type 1 Diabetes for almost five years. He celebrated his 13th birthday a couple of days after he was diagnosed, becoming a teenager whilst in hospital (cue the gift of a denim patchwork quilt, made by a local sewing group, which is still over the end of his bed).

My son’s diabetes family is small. It’s us! His mum, his dad and his two brothers. He lives with diabetes every day but it’s not part of his online presence. That’s all the family he currently wants or needs. He sees his medical team: an endocrinologist and a diabetes educator and they are his medical diabetes family. He is busy living his life, does what he needs to do every day and I think he does an amazing job.

My need for a diabetes family has been much greater than his. I also absolutely believe that the diabetes family I have around me has helped me to be a better mum to him.

I’ve always kept my online presence as anonymous as possible. I don’t ever post my son’s name and never post photos that would identify us. Strange isn’t it that here I am then, with a fully functioning pancreas and what I believe is the most amazing diabetes family?

I feel like I’ve passed through all the stages of life with my online diabetes family. I stumbled onto the scene like an awkward teenager having written poetry and feeling very needy and in need of reassurance. I am so lucky that my clumsy and sometimes misinformed attempts to connect with people did bring me into contact with the #doc and more locally #ozdoc.

I found some great people to mentor me, read some amazing blogs and survived my “diabetes teenage years” as my son turned into a young man. I am so absolutely grateful for the patience that people showed towards me, for the advice, for the positive comments my blog received and most of all for the connections across the world that stopped me feeling so alone.

The next stage, was where I came into my ‘adult diabetes years’, becoming more of an advocate for my son and also for issues affecting the diabetes community. I got more involved, campaigning locally for CGMs for all those with diabetes and having some good conversations with our local MP. I also felt like I needed to pay back into this community and into the search for a cure or for research into ways to live with diabetes. Every year I’ve held a fundraiser for JDRF and with a great bunch of women. We put the ‘fun’ in fundraiser every year. This event allows me to reach out to around 50 top females and quietly educate and raise awareness while we drink bubbles and have a great afternoon together.

I’m fading into the background now, I’m trying to embrace my ‘middle aged diabetes spread’. I don’t write so much any more. My boy is almost a man. My job will never be done with any of my boys but it feels like I need to step back and let him go, well, as best as I can. The maternal tug will always be there. Some of what we have gone through in the last year has been heart achingly horrid and other parts have been amazingly positive but these are not my stories to tell. That’s my boy’s narrative and should he choose to share it one day, that’s his choice.

The contacts I’d made on #ozdoc and #doc and the invaluable advice received in private messages gave me the strength and courage to act on his behalf. Without this, I hate to think of how we would have survived. The very survival of these hard times, allowed me then to privately share some of the wonderful moments with people and make even deeper connections with some. My thanks are heartfelt and deep to those who were there for us.

There are a couple of mums, one in particular, who I’ve met on Twitter and we have been there with each other every step of the way. Chatting online through the night and sharing jokes and hopes and well as frustrations and doubts has meant that I can function fully and happily in my day to day life. We have plans to meet up one day and that would be just fantastic!

What I didn’t realise until recently is that I have become part of the ‘diabetes family’ that other people have. Over the last year, some people have made contact and let me know that they enjoy reading what I write. This was unexpected and such a beautiful surprise! I was backing away from Twitter and blogging as I’m not really sure what my role is going forward but I’ve come to realise that, in small ways, I can help others and perhaps be there in the background for them just as others were for me. Not quite a wise elder but more of a crazy Scottish sweary mammy whose heart is filled with love for this big worldwide community that’s been thrown together by diabetes. I salute you all!

Control

Control! Wow, how this word has taken on such a different meaning and has such a different effect on me since my son was diagnosed, almost five years ago, with Type 1 diabetes.

Control – I used to think it was the supreme power I exercised not to eat the last slice of cake.

Control – the amazing ability my boy has had to manage his emotions when judged by those who do not understand him and the effort he makes each and every day to live a life with Type 1 diabetes.

Control – the special power I now use to keep calm when people judge my son.

Control – something that, as an outsider, I can see is very difficult to have in relation to life and living with Type 1 diabetes.

Control – a word not used by people who understand the complexity of life with a chronic condition.

Control – The thing I did not recently exercise of my eyeballs when my son was treated with respect and dignity by health care professionals who were working with him. The tears momentarily flowed in gratitude then we all smiled.

Control – the huge capacity my son has to put up with me checking in on him and asking how he is doing in all things in life but especially in relation to his diabetes. The supreme effort he puts in not to roll his eyes as I gradually try to ask those questions less and let him take over. It is so very, very hard to do this after five years of being there, every step of the way.

So, I say, Feck calm and WTF is control anyway?

Diabetes Billboard

Diabetes is a billboard in my life.

Sometimes, it is on the side of the road and I see it there, reminding me of things that need to be done to help my son who has Type 1 Diabetes. As I drive to work its presence in the distance will remind me that we need to book an eye appointment for him, or that he is about to run out of needles for his insulin pens.

Some days, it’s a bit closer to the side of the road, when I’m seeing how many things my son needs to do and I know some days this is hard for him. Those days I’m very aware of it as I work out how to best help my boy do the things he wants to do.

Other times, like recently, it felt like my nose was pressed right up against that billboard hiding everything else from my view, stopping me from moving forward. I don’t have diabetes but after five years of watching my son live with it, it can loom large in my world.

When your child is growing and changing, doing their best to live a full, active life with a chronic condition, so many judgements are made. Some lack an understanding that there is a person in the middle of this condition.

Loneliness and total despair only begin to describe the feeling of having your nose pressed up against that diabetes billboard. I can only imagine there are many others out there who have felt the same. What choices do you have when it feels like there is no way forward? The only choice is to look back over your shoulder.

I was so busy looking ahead, trying to figure out how to get through this horrid time that I hadn’t thought to do this until crisis point was reached.

When I looked over my shoulder, I discovered a small unexpected group of people out there, following at a distance. I found comfort and knowledge in their open arms. I just needed to ask, and through their wisdom, love and support, calm returned and new way forward was found.

I am so thankful to this small crew of amazing people. They know who they are and the support they gave to my son and to me. I will never forget this and next time I will know to look over my shoulder. You should try it, you will hopefully get the best surprise.